Thursday, September 6, 2012

One day, while Cohen was still in the NICU, I was sitting in the hospital cafeteria alone picking at my [junk]food and I overheard the conversation of the two guys at the table nearest to me. Both wore scrubs and had a I'm-geeky-but-not-in-the-trendy-way sort of vibe; they were heavily involved in a conversation about Magic cards (remember the card game Magic?). They were discussing strategies and what cards were best and a lot that I didn't understand while I mentally laughed at them. Here they were, two grown men seemingly obsessed with the game my brother liked in like 6th grade. I felt so superior.

Then one of them stopped to answer a call on his cell. After he hung up the other guy asked him what the call had been about. It went something like this:

Guy #1, very nonchalantly: Oh, it was just the blood bank. They like to hit me up every couple of months for some blood.

Guy #2, with some enthusiasm: Yeah man, me too. It's cool though, you know, you get a good feeling for helping people. And there's the swag.

Guy #1, now very enthusiastic: Yeah! I love helping people out and I love me some swag!

They go on to talk about the different sorts of "swag" they have received for their blood; t-shirts, hats, tickets to events... Then Guy #1 invites Guy #2 to go with him and give some blood on Thursday. They set the date and move on when their conversation.

Suddenly I didn't feel so superior. I felt really, really small and terribly grateful. Who was I to judge these men for their interests? These were men who I knew 3 things about: they work at a hospital, they like to play magic, and they love to give blood. 2 of the 3 things on the list qualified as pretty awesome and while the magic thing was a little strange in my book, I'm sure there are plenty of strange things they could have pointed out about me. The no-longer-pregnant-but-still-looks-pregnant style I was sporting should have been first one the list.

I think overhearing that conversation may have been a significant stop on my path toward acceptance and respect of all sorts of people. I was feeling so high and mighty about the fact that I had a baby with Down syndrome and I was going to love him and treat him like I would any other child. I wasn't going to let a potential disability get in the way of how I viewed a person. I didn't realize that there are so many more reasons than physical or mental disability that we find to make walls between ourselves. I was not seeing these guys as people, I was seeing them geeks. Embarrassing. I placed their entire value on one piece of information about their interests.

The next morning the resident informed me that Cohen had been given blood in the night. I couldn't help but think of those guys and silently thank them for the gifts they had offered.

Wednesday, September 5, 2012

I've had a lot of thoughts swirling around in my head that I've wanted to put into writing, but since I haven't yet finished telling the story of Cohen's early days I didn't want to move on. I've decided to give myself permission to move on to what is happening in my head now. I may swirl back to those messy first weeks of Cohen's life, but for now I'm just going to write whatever comes next.

Sunday, May 27, 2012

As we loved on our little one we noticed several times that he was becoming bluer by the moment. Several times while we were waiting to be moved to the mom/baby floor we called in the nurses and specialists, each time they gave him a little oxygen until his color was slightly improved and left, assuming all was well. Finally after midnight our nurse had the time to move us the other floor; we kept pressing and telling her that he didn't look right, he shouldn't look so blue, but she (a nurse with only a few weeks on the job) assured us that some babies just look a little "ashy."

We were deposited into a room on the mom/baby floor and immediately expressed our concerns to the new nurse assigned to us. She was calm and sweet said she'd have someone else help her examine him at the nurses station. That should have been my first clue that she knew something was wrong; our first two boys were never taken from my sight during our entire stay at the hospital, but I was exhausted and couldn't read the signs. While the baby was with our nurse, Chris and I said our goodbyes. He had to get home and start dehydrating my placenta (that takes a real man!) and he had to start his first day for his new fire department and 6:00 the next morning.

More time had passed than I could stand when someone entered my room. She was was one of the assistants that had been with us just after Cohen's birth, the one who had nodded her head when Chris asked about Down syndrome. For some reason her face has never left my mind. She was young, probably in her middle 30s, with a dark complexion and features that suggested she was of Indian descent. She was so pretty, she looked exactly like one of the doctors you'd see on some TV medical drama. Her eyes spoke volumes before her mouth uttered the words, "your baby is sick." I can't remember what else she said, only that she sat on my bed as I wept the hysterical tears of a new mama separated from her baby. She was so compassionate, she answered my questions, although I'm not sure how she understood me I was crying so hard. All I really understood at the end of the conversation was that there was something wrong with the baby's oxygen levels and that I could visit him in the NICU in an hour or two.

I called Chris; he came back to the hospital. I cried and pumped breastmilk until I was allowed to go visit my brand new son. His room was dark, lit only by computer screens. We were greeted by the constant beeping and occasional alarm of his monitors. And there he was, tangled in cords and tubes, blood still fresh on the IV lines they had inserted in him. Helpless.

A doctor took us to a conference room and explained that he had a hole in his heart and that the pressure in his lungs was so great that blood couldn't get through to send oxygen to the rest of his tiny body. He explained the best and worst case scenarios. He explained so many things, too many things. Every word he said seemed to knock the breath out of me. He was kind and patient, but I just kept repeating in my head, "No more! There can't be anything else, I can't handle it!" I stopped listening and let Chris absorb it all for us.

The pain felt like more that I could bear. I was allowed to briefly touch his little head before I returned to my prison of a room. The mom/baby rooms seem so happy when you have a baby to hold, to nurse, to love; but when your arms are empty those rooms are a prison. You can hear the cries of other sweet babies nearby. You have to watch happy visitors, arms full of flowers and teddy bears, anxiously ask the nurses where to find the newest addition to their families. And worst of all you have to meet the eyes of the other mothers, the eyes that are exhausted and content, they look at you expecting to share the camaraderie of this great and difficult task of mothering a new one. It was terrible.

Pumping became my mission in life. It was the only thing I could do for Cohen. Every 3 hours 24 hours a day I pumped. I sat in the baby's room in the NICU and I pumped. And I cried. Very little was accomplished that first week without tears involved.

Monday, February 13, 2012

Three weeks before our little boy's expected arrival I woke up for the 5th time in the night to go pee. I thought I felt a tiny little pop. I wondered if my water might have broken so I stayed up a little while to see. After about 25 minutes I couldn't tell, so I decided to go back to bed. I woke up and hour later at 3 AM and still wasn't sure if I was leaking water or not, so I stayed up about an hour this time. Again I was unsure, so I woke Chris and told him I was just going to drive to the hospital (less than 15 minutes from our home) and have them check, since I was Group B Strep positive and would need to start antibiotics if my water had broken. It was absolutely pouring outside and Chris insisted that he would call my mom to stay with the boys and he would drive me.

At the hospital it took several inconclusive tests and almost 5 hours before they finally sent in someone to do an ultrasound to see for sure if the water had broken. It had.

I was given an IV for the antibiotics and encouraged to rest since it had been a long night and my labor hadn't started. We had breakfast and lunch, we walked for a long time to try and jump-start my contractions, and then I returned to the room so they could hook me up to the monitors.

That's when the little guy started to do his tricks. His heart rate was going crazy, the midwife on call kept trying to convince me to get pitocin, and I was beyond stressed with how medical it had all seemed. My previous births had been really peaceful and I had delivered both in the tub so all the "routine procedures" that kept being thrown at me felt really scary.

When my midwife finally arrived, I still hadn't really started laboring and the baby was still having a hard time so she refilled my uterus with water to give the baby something to move around in. Then she said that if he didn't hurry up and get things moving we'd have to get pitocin. Apparently all we needed was a little more water and the threat of pitocin because immediately labor kicked in!

At 5:45 pm my contractions began (I was at a 4 and had been since I arrived) and Cohen Martin was born at 6:30 pm! It was absolutely the most intense 45 minutes of my life.

Cohen was breathing, but quite blue, so instead of being placed in my arms he was taken by a team of specialists to be examined on the other side of the room.

As the Doctors and nurses moved around my precious little one I caught a glimpse of his face and I knew. Tears streaked my cheeks as I realized that this was reality- it wasn't some figurative baby with "designer genes." This was my baby and he has Down Syndrome. I watched Chris whisper to one of the many nurses surrounding my little Cohen, I saw her nod and say something back, then I saw his tears. The time from that moment until they placed him in my arms is still a blur.

When they put him in my arms, I suddenly knew that we would be okay. He looked at me, eyes full of the wonder that only a creature brand new to our would can know. He latched right on and started nursing. He was so beautiful, smaller than the other boys had been, and he had those signature upturned almond-shaped eyes.

I had read a story in a magazine once in which the doctor told a new mama something along the lines of "Your baby is wonderful, and perfect, and has Down Syndrome." That story stuck with me and that's how Chris called and told our families. Both of our parents and all of our siblings had nothing but sweet and encouraging things to say.

As I repeated the words in my head "He's wonderful and perfect and he has Down Syndrome" I began to believe it.

This is getting long again, so I think I'll have to do the NICU (Cohen Part Three) later this week!

Tuesday, January 31, 2012

You know those moments in life where you begin to think "Hey, I've got this." Things are going well, life isn't easy, but manageable and joy isn't too hard to find if you just look round. That's where I found myself last February: Chris was done with Fire Academy and looking for a job, I was waiting tables evenings and weekends to make ends meet until he found a job, almost all of our meals were made from scratch, I had a daily, weekly, and monthly schedule for everything and (though I wouldn't have admitted it) I was generally feeling like super-mom.

That's when I found out I was pregnant (surprise!). I was pretty upset at first and really nervous about Chris' job situation. After the initial shock wore off I bucked up and thought "I can do this!" Super-mom reappeared for about a week... until morning sickness hit. It was worse than I had ever experienced! That coupled with a crazy-hormonal shift sent me into a tale-spin of depression and exhaustion. Luckily I never threw up on anyone (or their food) while I was waiting tables.

Mid-way through my second trimester my energy returned. Chris got hired by a good department in a not-too-far suburb. Things were going well. Something about this baby felt a little different, so I was just sure I'd be having a girl. I had both of my big boys at the hospital with a midwife we loved, but had always wanted a homebirth, so I made an appointment with the midwives who attended homebirths in our area. Anticipation mounted as I struggled back and forth about whether or not I wanted to know the gender at our ultrasound. Chris won out and we decided to find out. As soon as they got the picture on the screen we saw it: A clear dead on shot of our little baby's boy parts. I swallowed my disappointment and pride and began making plans for another rowdy boy.

Later that week I received a phone call from one of the midwives at the hospital. She told me that she wanted to discuss my ultrasound. I knew something must wrong, as I had never "discussed my ultrasound results" with either of the other boys. I sat down immediately, bracing myself for the worst."Your baby has BLAH BLAH BLAH, BLAH BLAH BLAH, and BLAH BLAH BLAH. Each of those things can be an indicator of down syndrome on it's own, but with all three it doesn't look good." She encouraged me to get a blood test that would help narrow my odds and told me that it would be a good idea to get an amniocentesis if the odds were high.

I told Chris and we cried for hours. We mourned the loss of the "normal" baby we had expected. We cried for the years we thought we'd have alone together since we had had our children when we were young. We wept at the thought of burdening our other children after we were gone. But mostly, I think, we cried with guilt for feeling the way we did. We loved our baby and we wanted to accept him for whoever he was, but we both really hoped that he didn't really have it.

I did the blood test, hoping that it would erase all of the fear that had grown in my heart. The odds for a woman my age to have a baby with down syndrome are like 1:1100, so I was expecting my results to reflect that. They didn't, 1:40.

We cried some more.

The genetic counselor called. The results from the blood test combined with the results of the ultrasound put us at 1:13.

I laughed and cried at the same time when I hung up the phone. Somehow I knew that he had it, even though I didn't want to admit it.

I did a lot of research- part of me getting excited, realizing that an extra chromosome isn't the end of the world. Every time I heard of someone with Down Syndrome doing something wonderful I would fly. But every time I saw a list of the health concerns associated with Down Syndrome I would sink. My days were a mess. I put into words the real juxtaposition of emotion that I felt. The heart and breathing problems that are often present in newborns with Down Syndrome made me give up me dream of a homebirth in order to insure we were near a good NICU.

I decided against the amniocentesis, even though it would have given us a definitive answer to whether or not he had Down Syndrome- it had a miscarriage rate of about 1:100 and I didn't feel like playing the odds.

One of the things that was noted in the ultrasound was a possible problem with the kidneys, so we had to go for ultrasounds every 4-6 weeks. It was wonderful! Just when I'd be feeling most worried or fearful I'd get to go into a dark room and watch my precious one play, suck his thumb, and squiggle around. I was able to his growth from month to month and enjoy him for what he was: a baby.